Thursday, February 16, 2006

Appointment With the Neurosurgeon

So, I bet you're on pins-n-needles waiting to find out about my appointment with the neurosurgeon on monday, right? The first bit of news is I've finally got a confirmed diagnosis of my disease, in other words, I have a name for what ails me and it's not migraine! Big shocker there. NOt in the truest sense, anyway. The pain is similar to migraine and cluster headaches, but it isn't those two types of headache. This explains why all the migraine drugs they kept trying on me, didn't work or would only work a tiny bit. I have what's called occipital neuralgia. It's hard to describe without having a model of a cervical spine in front of me, but suffice it to say that if you had no discs in your back, cushioning between your spinal column bones, they'd be scraping and compressing dead against the nerves and nerve roots and endings. Well, this is just like that, only in the neck. During my accident, the cervical spine shifted in such a way that now the bones are crushing down directly around the nerves and constantly rub at them, sending pain signals into my brain. I am giving you a very rough, laymen's language interpretation of what I understood from the doctor's teaching us, ok?
So, along with that damage, I've also got some arthritic swelling in those bones, which closes over that space around the nerves even more. This is why my pain never stops and didn't even get relief until I was put on narcotic pain killers. Nothing else would have worked on it. The problem is that if there was no way to fix this, then in about 5 years I'd need hefty bags amounts of narcotics to get rid of the pain, rather than the amount I'm on now, which helps, but in no way gets rid of the pain completely.

I asked why no one ever told me this, and he said that most doctors and neurologists wouldn't pick up on it because, a) the symptoms are so similar to migraine, except that the pain's chronic, so that's why the doctors always just acted like I was a big baby or was making it up, maybe. I mean, I could say that, to be nice and give them the benefit of the doubt, even though the truth is they're just assholes. The other reason is that unless they specialize in it, they won't think of it. Voila! The reason no one recommended me to the surgeon until now. And, I guess my new pain management doctor picked up on it, because he knows the surgeon personally and refers patients to him, frequently, and he read my medical charts. What a novel idea.

The good news is there is hope that the pain can be taken care of. Now, they can't do anything about the damage that was done. But, they can "burn" the nerve endings, (which is what the bones are scraping on), so that I don't feel anything there for about a year or even two. The bad news is that he can't do that close enough to my occipital bones and nerves, where my pain is at it's worst, because of the high incidance of stroke in that area. It's right next to a major blood vessel. If' you've been reading my blog for awhile, you'll know that I used to get injections in that area and they had to be extremely careful just how they put the needle in, so as not to touch this certain vessel. So, burning the nerves will probably take care of about half the pain that I'm in. Yay! I can deal with that, no problem.

But, there's more!!! (Don't you love it when they say that on infomercials? I love that part. I'll watch the whole infomercial, just to here that part. lol What would happen if we lived our lives like that? waiting to hear: "But there's more!" lol) He's going to do this thing, and I can't tell you what it is, because it's not exactly kosher here in the states, yet, thought they do it all the time in Europe and he does it all the time, where he scrambles some electrons in the occipital area of my head. Now, that freaked me out a little, because I really like my brain. I mean, if you were to ask me my favorite feature of my body, I'd say my brain. That's why this thing has been so devastating to me. Ok, anyway, so the philosophy behind that is pure science fiction. No joke, they even made a movie based on this idea and Ben Affleck was in it, but the name of the movie escapes me at the moment. I'll come back and edit it in later. Anyway, what happens is that it's like blocking a radio transmition or scarmbling a phone call. If the brain can't understand the message, it can't interpret it as pain is what, I think, it boils down too. See, I wasn't as clear about what he was talking about with this.

The final coup de gras will be when he inserts an electrical impulse unit under my skin. He's the first doctor to do this with this brand new one that doesn't have to have it's batteries changed,e ver. I guess you can just recharge the batteries by holding a mouse over the unit, above the skin, while you watch tv for half an hour and it recharges itself.

Between these three, we should be able to just get rid of the pain completely. Each part of the treatment plan will get rid of a little more pain. The tough part, for me, will be waiting for this to happen. It has to be approved by insurance and we do the burning first along with the scrambling, then the tens unit will be installed and actually sewn into my occipital reason, using 8 leads and two electrical units put under my skin, because I have, or, had, an active lifestyle. I'll be able to go back to swimming, jogging, bike riding, hiking, working out aerobically for an hour every day. Everything. The whole shabang. I'll get my life back.

I feel hopeful for the first time in years and really happy that something can be done about the pain, but it also makes me very sad for the migraneurs who can't be helped and who have to be in this kind of pain all the time. There's no sure treatment that will relieve their pain, ever, and I feel sad about that. I may get my life back, or some semblance of it at least, but they never will.


At 11:30 PM, Blogger Colin said...

Wow, Jessi! A treatment plan that holds some promise. I am so very very pleased to hear that. I wish you very success. Good luck with the insurance. I imagine that will be a challenge if they consider any of the treatments to be experimental.

At 3:36 AM, Blogger only pain is real said...


a diagnosis (!!!) and a clear cure!! i am overjoyed for you, jessi.

the surgery part will be difficult...but fuck, i'd do it in a heartbeart. (burn what? who cares, go for it!!!) are you going to get a second opinion???


At 11:55 AM, Anonymous Kerrie said...

What promising news! It's so good to have a diagnosis.

Is your doctor implanting a nerve stimulator? They're much smaller than when I had mine implanted, so it probably won't be visible (which I know was a concern.)

At 5:13 PM, Blogger bearmanU.S.M.C. said...

yeah Jess, Looking forward to hearing about the results, your in my prayers sis!

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At 12:06 PM, Blogger Jackie said...

Congrats on a diagonsis! I'm so happy for you.

One of the things that is so hard with classical migraines, is the feeling that it's "all in your head". I'm so please that you not only have a diagnosis, but also a clear path of "healing" Good luck! I can't wait to keep reading.

At 8:39 PM, Blogger Angel said...

((((((Big hugs)))))) I'm so glad you got a diagnosis--that is half the battle I think.

I truly hope this ends your pain!

At 2:54 PM, Blogger Penelope Marzec said...

I'm so glad you finally have the right diagnosis!

At 12:26 PM, Blogger thefrogpryncess said...

I have occipital neuralgia, too, and migraines, and they think I may have atypical trigeminal neuralgia, and also I have allodynia. I live in semi-darkness most of the time and am now trying yet another round of "promising" drugs to try and control the headache monsters that plague my life. I wish you the best. I wouldn't wish this pain on anyone.

At 10:59 PM, Anonymous Eleanor said...

Hi Jessica,

Wow, that's AMAZING! I'll be crossing all my fingers and toes for you that it all goes well.

At 8:50 AM, Blogger khhhch said...

I am so happy for you, that you finally found a couple of GOOD doctors, who actually took the time to read your history and listen to you. I've found the best ones actually do listen to the patient. I believe insurance companies have found if they make processes difficult and time-consuming, most patients are unsophisticated or otherwise unable to deal and will give up in frustration. I truly hope and pray this treatment plan will be your salvation. (Had you already settled from the accident?)


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